March 8, 2019

No Spring For You!

I had my thirteenth Tysabi infusion on Tuesday. I've now been on the treatment long enough for my body to crave it. The 3-4 days leading up to the infusion are TERRIBLE. I hurt. So much. And the immediate improvement is equal parts sad and miraculous. I could barely drive to the hospital due to super intense pain along the length of my spine, and within 10 minutes of the medicine hitting my bloodstream, my pain was gone; of course, the pain returns almost as quickly after IV removal, but the shooting, stabbing pains that wrack my body calm to a dull ache, that I have learned to live with.

I also found out I get to do super fun Neuropsychological testing! Yay me! It all came about because when I was looking up my student loan information so that we could file our taxes, there was this little link to Total and Permanent Disability... And I totally 100% qualify, which means that my student loans would magically be forgiven. But. If I go down that route, I need to be 100% certain that I will not return to work... EVER. And this is sort-of a big decision, because on the one hand, no student loans, but on the other hand, never work, ever again? Not even to be a substitute teacher once a week? I'm only 36! Am I ready to totally retire?


Whatever I DO decide, though, a neuropsych eval will establish a baseline for my current cognitive deficiencies. However, I'm a little scared of what the findings will be. I do know that I have had very difficult behavioral changes at times, dependent on where active brain lesions are. I also do know that I have had the wrong emotional responses at times... very wrong. There have been a number of relapses in which I am no longer Caroline. I am a different person altogether, and Caroline is just off on her own, floating in the corner of the ceiling, watching some monster of a person who looks like me, and is wearing my clothes, but IT IS NOT ME. It IS a good sign that I am able to recognize this discrepancy however, it is NOT a good sign that I am unable to control it. (Hi. My name is Caroline and I'm sUPEr crazy.)

I'm also supposed to do another test, but I can't remember what it's called. It's supposed to, like, measure your physical functional motor abilities? Or maybe check my gait? I really have no idea. When the tests were being explained, I was listening, but I didn't HEAR what my neurologist was saying. To be frank, I just kept repeating "NeuroPsych Eval" over and over again so that I wouldn't forget what it was called. Oh well, that's life I guess.

I have also decided I need to revamp my housekeeping schedule. I can do stuff and be productive in the morning, but by lunch time, MAN, I have to stop. I think I might have 2-3 usable hours in the day. After that, it's a struggle. So I need to switch things up to keep this household running.

For starters, I'm not going to be switching the chore chart every week. Instead, I am going to assign things quarterly. This way, my kids will have plenty of time to learn how to keep specific areas up to par. It will also negate the laziness that some children have, because it's really not fair to the next person to get that job area, because they inherited the mess from the original person. Does that make sense? Anyways. People will have their jobs for THREE MONTHS. This will also give them plenty of time to deep clean the assigned areas. I'm thinking that we'll split it into: Kitchen, Laundry & Linens, Bathrooms & Pets, Common Areas. Everybody will be in charge of their own bedrooms, and the standards of living in the bedrooms will also be addressed.

Meanwhile, we are 7 weeks away from the last frost of the season. The weather was so gorgeous this week, sunny and warm! And now it's snowing again. Oh well.

It is also mine and Troy's 17th wedding anniversary. I looked up the traditional gift (not that we really give gifts, I just like to know all the things) and for the 17th year, the traditional gift is furniture. Luckily, we just bought a new king sized bed, so we're all set! And we have a new garage door being installed today too. I like when we unintentionally do the perfect thing. And that's all I have to say about that.

I will also be doing a nutritional cleanse next week. I need to make sure I have stuff to do so that I don't snack. I am a BAD, BAD snack fiend. I'm going to look through my all my painting supplies and work on those projects. The two bedrooms upstairs need to be painted a nice neutral color, as they were formally the bedrooms for a young boy and girl, and one is very, very pink, and the other is very, very rocket ship-y. I also need to restock some of my acrylic paints so I can finish the mural under the stairs, and then seal it. It's so cute, and I love it, but I've taken a r.e.a.l.l.y. long painting break. It will definitely be a fabulous distraction during my cleanse.... bodies are so dumb.